When the Death Star was under construction and then, once completed, sent out Tai Fighters to establish satellite stations, I was busy moving on with my life. Very busy. Work swallowed me whole–and I welcomed it. I was no victim, trust me. I kept putting it off and putting it off and, well, now I have to deal with the consequences.

I was told that metastatic breast cancer is managed like a chronic disease. I didn’t have a chronic disease, or at least anything that I thought of as one. What did that mean? The best description of a chronic disease was when Eddie Murphy, in his raunchy stand up movie Delirious, described herpes: “You keep that shit forever. Like luggage.” Damn, I’ve got luggage all right. And the wheels came off. I didn’t go into denial. I just accepted it as a concept and went about trying to find a way to understand it and deal with it.

Blogging became a big part of it. Research was a close second. I could blog about my observations and experiences in order to take control of the emotional side of my life. But, as is my wont, I became interested in how this disease was socially constructed. Only that bigger picture could give me insight to my disease and deal with it in a way that worked for me. Pinktober followed close on the heels of my diagnosis and I raged against that insipid construct. Happy pink boas, pink wigs, pink shoes, pink water bottles, pink nail files, pink football teams. Christ! Where did the cancer go? Is this how we as a society choose to deal with disease? Pinkwash it until it’s stripped of all of its identity and becomes a sick rite of passage that is merchandized beyond recognition as opposed to its being a killer? How did we get here?

I had my own ideas, primarily a post-modern perspective of the construction of disease through language. For example, in my post “Language,” I argued that “the word mastectomy has taken on a . . . feminized meaning–all co-opted as part of this twisted pink ribbon culture.” Mastectomy is, in essence, an amputation. But it had to be marketed–constructed–so that it was less objectionable. The marketers, if you will, were men. Men were surgeons. Men controlled the delivery of medicine. And I asked: “And if I was a man and was diagnosed with cancer in my right testicle, would I have the left testicle removed just in case?”

Oh yeah, that’s gonna happen.

In the exceptional article, “Our Feel-Good War on Breast Cancer,” (Sunday Magazine, New York Times, April 25, 2013) Peggy Orenstein examines the pinking of breast cancer and argues that said pinking has not made women aware as much as it has put them at risk. Komen, intent on raising funds to largely sustain itself and its substantial market share and salary pool, buries any talk of the limits of early screening and mammography in general. Prophylactic amputations are accepted as a way of treatment–sometimes without question and some women may never have required treatment in the first place. Are we “empowered by awareness or victimized by it,” asks Orenstein? “The fear of cancer is legitimate: how we manage that fear . . . –our responses to it, our emotions around it–can be manipulated, packaged, marketed and sold, sometimes by the very forces that claim to support us.”

But what are these social and cultural forces that shape–and continue to shape–our views about disease and, by extension, chronic disease? Our attitudes that individuals are responsible for their health and, by extension, having their disease in the first place didn’t just pop out of thin air. Komen’s emphasis on mammograms, self-exams, and prevention is the flip side of the coin that says “It’s your fault” and that wasn’t invented by Komen. You need to dig deeper for those answers. And someone has. Brilliantly.

In her newest beautifully written and expertly researched book In the Kingdom of the Sick: A Social History of Chronic Disease in America (New York: Walker, 2013), Laurie Edwards asserts that we are at an intersection in medical science and social acceptance–we are accustomed to being cured, yet more and more of us are being diagnosed with chronic illness, so how do we deal with this as a society? How are chronic disease patients perceived in an era of physical fitness and endurance? What are the origins of these attitudes? And, most importantly, what are the dangers to both the individual and the health care system in perpetuating the paradigm of blaming the individual with chronic disease? “Therein lies one of the most compelling tensions history reveals,” writes Edwards. “The quest to understand the nature of illness from a biological perspective versus the quest to understand illness from a personal perspective.” (12) This has led, largely, to patients with chronic illness being left misunderstood and undertreated.

Edwards examines a long arc of thought with regard to the origins of disease going back from Hippocrates and the great philosophers to the Age of Enlightenment, to the Industrial Revolution, and to the cult of self-improvement in the mid-twentieth centuries and its subsequent iterations.

The “upsurge in enhancement technologies [plastic surgery or lifestyle medications] is what physician, philosopher, and bioethicist Carl Elliot calls the American obsession with fitting in, countered by the American anxiety over fitting in too well. The very nature of chronic illness–debilitating symptoms, physical side effects of medications, the gradual slowing down as diseases progress–is antithetical to the cult of improvement and enhancement that so permeates pop culture.” (34)

Enter the 1980s and Susan G. Komen and cause-related marketing. The only time we see women with cancer is when they are rosy-cheeked, walking for the cure, and happily posing in everything pink. So there they stand, so-called “warriors” against an identified foe who are expected to emerge victorious from their personal war. A war they are expected to win, of course. Our society puts the emphasis on cultivating awareness and prevention, but lacks the cultural awareness to understand the nuanced nature of chronic disease. For there you will find no finish line of happy, feminine, pink, white middle-class women for those with stage iv cancer. In the land of chronic disease successes are defined very differently. Because of this the land where one lives with and manages their stage iv cancer “is a murky, gray space, when for so long we have thought about cancer in the state terms of living or dying.” (101) Especially when you see how the acute manifestations of breast cancer compares with their stage iv counterpart.

The awareness campaigns have done little to nothing for women with chronic disease. Komen pats themselves on their collective backs for featuring a woman with metastatic breast cancer in their marketing blitz (who has since died), yet uses a pittance of donated funds for research. And in a society primed to expect diseases to be cured–and cured quickly–we inhabit a gray space indeed. As I wrote some time ago, “[living with metastatic breast cancer] is a very odd existence. One so alien and surreal–truly undefined–it is not surprising that women with Stage IV are virtually ignored in the pink ribbon zeitgeist. After all, how do you market a nightmare?”

Edwards deftly explores a wide range of chronic disease from AIDS to obesity and the stereotypes with which they must fight in addition to their disease. Women, in particular, are at risk for being characterized as hysterical or stressed when they do not respond to treatment and become a challenge to diagnose. In this vein specifically, Edwards uses her own experience with chronic disease and those of the individuals she interviews to inform and direct her research. In the end, individuals with chronic disease want to be respected, understood, and given the tools they need to lead fulfilling and productive lives.

Both Orenstein and Edwards leave us with a cautionary tale: it serves no good purpose to be swept up in a movement of good feeling or ascribe to negative stereotypes as if we were lemmings rushing off a cliff. At some point you need to plant your feet firmly on the ground and say “STOP! I refuse to be manipulated! I will make up my own mind!” This is not an easy task, but one for which we would be better off if we did it more often. Read this smart article by Orenstein* and this brilliant new book (hot off the presses) by Laurie Edwards and stop running toward the cliff’s edge.
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20 Responses to Chronic Illness

This is a brilliant post and so spot-on. People with metastatic disease are often lost in the shuffle. Why does our society feel the need to pretty-up breast cancer? It’s a hellacious disease. Men’s cancer issues don’t get prettied up. I dread Pinktober. By the way, the Peggy Orenstein piece is brilliant and so accurate.

Thanks, Beth. It is an important piece–seminal, even. I’m not sure how I’ll deal with Pinktober this year. Last year it was right on the heels of my diagnosis and right on with that awful tumor flare I experienced. So I raged with anger that was–when I look back on it–surprising. This October I will keeo the orange in the month! Maybe I’ll even picket a Komen event.

1-Love the Death Star comparisons in this and other posts; I am a Star Wars nerd (May the 4th is right around the corner, if you are one too)
2-Cannot wait to read that book
3-re: the comment by and your reply to Victoria, about the anarchy–you know what? Why not? I WANT to block an intersection, except that won’t get me heard, just yelled at, I am sure. sigh.

EXCELLENT, Yes, yes, yes, yes…… From this somewhat teeny bit science savvy advocate point of view, metastatic breast cancer is NOT a chronic disease. It’s a terminal illness. If we allow the word chronic to creep into the vernacular, we will (just my opinion) be once again, watering down the reality of a Stage IV diagnosis. We aren’t near chronic YET.. that doesn’t mean we can’t get there, but if we create an illusion, I think we will stall things even further. As it is, little funding is directed specifically at metastatic disease. We are just beginning to turn up the heat. I’m staying in the kitchen no matter HOW HOT it gets…. That’s my Fearless Friend commitment….

Love ya and I **will** be seeing you at some point in the next bunch of weeks…

I agree with the language. Absolutely. Language will shape what we do. If we call it “chronic” it loses urgency and sounds so “clean” and “controlled.” Either that or modify chronic to include that urgency.

Adding another point to this, though–other chronic diseases due to cause death, they are often terminal: Multiple Sclerosis, emphysema, cystic fibrosis,to name but a few. It should be noted that not all breast cancer metastasis is fatal either. So I think we can split hair on the definition of “chronic” or “terminal.” In the end, we know what we’re talking about.

I also wonder of the “terminal” gives people less incentive to do anything about it. That’s essentially what that researcher was saying in Orenstein’s article (too lazy to look up his name). If we’re terminal, then so what? We’re gonna die anyway.

Very well said, Scorchy. This book sounds like a must-read. Feeling isolated is no place to be, and many times I feel that way. Without my good friends I, as a product of metastatic disease, would be lost.

Isn’t it the truth! This book is brilliant; I can’t say enough good things about it. We are all a part of something bigger than us–and I don’t mean spiritually. But we are shaped bu society as much as we shape it and I think it is always useful to take a step back and see what is going on around us. Between Orenstein’s article and Edwards’ book you can get a great appreciation of where we are and how we got here.

Brilliant and eloquent as usual, you have outdone yourself with this one Scorchy! Thank you for another great post and for standing up for yourself and the thousands of us living with stage IV breast cancer xoxo

I have long suspected that many women were being over treated and having mastectomies as doctors feared malpractice and were afraid to argue that a woman only needed a lumpectomy. Fear trumps science. I have many friends in this boat and they get angry and insist mammograms saved their lives when mammos are questioned as being an imprecise test at best. My mammo said I did not have cancer (though I had requested diagnostic mammo as I felt something new) and three months later, my nipple inverted when I was back working in Central Asia and didn’t have easy access to health care.

Yes, I now have mets in my liver and lungs. I have a State Senate hearing this week to fight for medigap coverage (my state does not force insurers to cover disabled nor do they regulate premiums as 30 other states do). And I am pushing the state breast cancer awareness group to support me and never have gotten a call back from the American Cancer Society’s local lobbyist. I don’t know if either will be at the hearing. I recognize I am not the success story for these groups and they remain more focused on their own rice bowl than actually helping those with metastatic cancer.

Note: When disabled become eligible for Medicare, it is a state decision as to forcing insurers to cover those under 65. And in addition, even if an insurer offers a policy it will be cost prohibitive. 20% of my medical costs with no out of pocket limit will eventually bankrupt me. I have been told that if I can hang on until I’m 65, then I can get an affordable policy. I just turned 50. Think I’ll be here in 15 years?

Thanks for your comment. I’m really sorry that you’re stage iv. And this really pisses me off. Where the hell are the cancer organizations when you really need them? Oh, sure. You’ll get a fundraising letter and a pink fucking nail file in the mail, but WHERE ARE THEY NOW? WHEN THEY COULD REALLY BE USEFUL?! This would be a great time to wear a pink feather boa and walk for the cure, wouldn’t it?

Between that breast cancer support group forcing Angelo Merendino to take down his exhibit and this I’m about as red hot as I can get in one day. BASTARDS! ALL OF ‘EM!!

We are creatures of habit that often learn from others, we desire tranquility not complexities thus we attempt to form an environment that provides this peacefulness which makes me wonder why the news hasn’t been transformed into something fluffier.

Are we just the disgruntled gals who can’t stand pink so we push against it? I doubt it, I saw a commercial for Komen Race for the Salaries the other day, it was a bunch of pretty ladies all dressed in pink along with pink backgrounds. I was aware, mammogram in 2007, 2010 then again in 2012 at which point they found a 9cm (3 ½ inch) malignant mass, yeah that worked let’s put a bunch of funding toward this freggin false hope.

I will definitely get the book and I just might write a post comparing the culture around chronic illness in America versus my country of residence, France.

I do work around another issue that impacts me personally and about 6 million other American citizens. What I have learned from that experience is how hard it is to change anything when no one wants to listen. Where an issue is too abstract, too complex, completely outside the experience of most people or so unpleasant that no one wants to think about it, the biggest barrier is to get people to first take their fingers out of their ears, stop singing “Tralalala” and just listen. Making it personal or funny or gay can do that. We’ve often joked that what we really need is a “poster child” – someone so abused by the system we are fighting that we will catch the attention of at least a few of the other 300 and something million we wish to convince.

That said, as I grow older and more cynical, I find that I agree with James C. Scott who wrote in his excellent book, Two Cheers for Anarchism:

“Episodes of structural change, therefore, tend to occur only when massive, non-institutionalized disruption in the form of riots, attacks on property, unruly demonstrations, theft, arson, and open defiance threatens established institutions.”

In short real change depends on openly expressed destabilizing rage.

For ideas on how to liberate your inner “problem child” Scott has a wonderful training exercise he calls “anarchist calisthenics.” 🙂

to some degree Scott is right. Look, so much progress has been made with regard to breast cancer. But, at the same time, many things have remained the same. What the ACT UP! movement in a decade we haven’t been able to do in four of them. Not that I’m advocating anarchy as the first line of action, but there is something to be said for it when, as you said, no one wants to listen. Hell, we won’t even block an intersection to get heard. xoxo